Jul 11, 2019 09:38AM 2019whatayear wrote:
I agree with you completely. Thank you for speaking out in your area!
Posted on: Jul 11, 2019 09:00AM
I had BC twice. IDC in 2003, ILC in Dec 2018. I went to a cancer hospital in Philadelphia and was refused a double mastectomy because their policy is to not take off a healthy breast!
I was stupid, I made a HUGE mistake, I didn't go elsewhere for a second opinion!
I am writing this to give others information as it is too late for me now.
The hospital I went to will do prophylactic mastectomies for BRCA positive women only. That is so unfair! My mother and two of three sisters had breast cancer. A BRCA positive women has about a 75% chance of developing breasst cancer. I agree, prophylactic mastectomy is a reasonable treatment for those women. But when did that trump a women who had BC twice and especially ILC which is more common to be found in both breasts?
I am angry at myself, and angry about this hospital's policy.
I see my breast surgeon in a few weeks and I plan to speak up about this for other women's sake.
Women need to do what is best for them, balancing their health with their life! I was lucky, I didn't fear losing my job, but other women aren't so lucky.
My doctor is male, but a female fellowship doctor said the same thing, no removal of healthy breasts!
I plan to push back at this hospital because women should be able to go there and get the best treatment for themselves. It is a great hospital and they do amazing work for women. I understand that the American Cancer Society feels the same about removing a healthy breast, but it should be the woman's choice, not the doctor's!
I hope no one else here was refused a BMX, but I wanted to put this out there and remind women that if something doesn't seem right for them, to GET A SECOND OPINION!
While there have been many great advances in the area of breast cancer from my first diagnosis to my second, progress in treatments are still not acceptable to me. I hate that we are forced to accept them because it is the only options we have.
Breast cancer was never my enemy, but breast cancer treatments have been. This isn't true for all BC patients but I feel it is true for the majority of us. I hope research continues and that my grandchildren don't have to suffer the way I have or other women have, if they get this disease in their lifetime!Log in to post a reply
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Jul 11, 2019 09:38AM 2019whatayear wrote:
I agree with you completely. Thank you for speaking out in your area!
Jul 11, 2019 12:25PM Rrobin0200 wrote:
I agree wholeheartedly. I am so grateful that my hospital performed a prophylactic mastectomy on my competency heathy right breast, no questions asked. Even my insurance didn’t dispute it!
Jul 11, 2019 12:36PM santabarbarian wrote:
How ironic that if you told them you were trans they'd be off immediately... possible back up plan???
Jul 11, 2019 12:48PM AliceKo wrote:
Maverick, it is definitely a woman's choice. I am sorry for your experience and you have a right to be angry.
Just keep in mind that double mastectomies do not decrease the risk of cancer coming back. So, the cancer is back despite no breasts. I met a number of women (support groups and conferences) with double mastectomies whose cancer UNFORTUNATELY returned and they were now metastatic. And I wonder and I have asked my oncologist, would the cancer be a different stage if there was breast tissue left somewhere? And my oncologist said yes, the breast cancer usually prefers the breast tissue.
Jul 11, 2019 01:43PM Mavericksmom wrote:
Thank you all for your comments!
AliceKo, I understand what you are saying and greatly appreciate your informative comments.
I did know it can return even with mastectomy. The reason I wanted a bi-lateral mastectomy was because ILC doesn't spread to the other breast, but rather is more commonly found in both breasts or develops in the other breast than IDC does.. ( I assume from the same triggers that caused it in the breast that was diagnosed first.) Removing a breast gives a 90%+ chance of not getting BC, not 100% but pretty close! I don't want to go through radiation or have lymph nodes removed again. I suffered severe radiation burns in 2003 that caused huge wounds on my DIEP reconstruction I had in January of this year. They finally stopped oozing and bleeding as of a few days ago, which was over 6 months post surgery! I also have lymphedema which I think is a stage 2. I am currently receiving therapy for that in hopes of getting it in control. Removing my right, non-cancer breast now would have lessened the chance of having the same thing happen. There would be no radiation or lymph node removal.
I feel my doctor is playing BC Russian Roulette with me. He is betting I will never get it in my real breast, or thinks "no big deal, she can just have a lumpectomy and radiation again if it shows up!" News flash......NO I won't ever have radiation again! I don't care how many advances they have made since 2003, they told me how unlikely it was to have anything but redness in 2003! I could go into the horrible details of that, but I won't because it brings back too many horrifying memories and I can't change it. My one sister had radiation and was fine, my other sister is currently having radiation so the verdict is still out for her. My mother didn't have radiation due to age and other health issues. I just know I can never go through that again!
Also, I simply can't afford to go out on disability again. I am retirement age now and need to work a few more years to pay off debt before I retire. I work in a school, so that means I do have summers off, so I plan to have my mammogram done in May. I know even the best plans can be useless when it comes to cancer, but my doctor thought my remaining breast was healthy so I will take my chance that he is right about that. Honestly, I doubt it will even show up on a mammogram if I get ILC in my real breast. It didn't show up on one the last time. They already told me they won't do ultrasound on it unless something shows up on the mammogram or I feel something. I can't have MRI because of other health issues.
Again, I wish I had gone somewhere else and had both breasts removed. At least then I would feel I did everything I could. Now I just feel like a ticking time bomb.
Jul 11, 2019 01:45PM - edited Jul 11, 2019 01:49PM by Beesie
Alice, it is true that a BMX will not reduce the risk of a metastatic recurrence. In the vast majority of cases, the seeds of the development of a metastatic recurrence happened well before the surgery and in fact well before the cancer was discovered in the breast. Most metastatic recurrences occur without there being any local recurrence.
A BMX may however reduce the risk of a local recurrence. More importantly in Maverickmom's case, it will significantly reduce the risk of a new primary diagnosis. A previous diagnosis of breast cancer is a significant risk factor to be diagnosed again, with a new primary breast cancer. In Mavericksmom's case, this was already her second diagnosis. Although it is rare for women to be diagnosed with breast cancer 3 times, for those already diagnosed twice, the risk is high. Although of course the examples on this board are anecdotal, it's not difficult to find many women here who've been diagnosed a 3rd or even 4th time.
Mavericksmom, the decision on a prophylactic mastectomy absolutely must sit with the patient, not the doctor. That said, I think it is a different dynamic when the patient has a breast cancer diagnosis and/or a high risk condition, vs. when the patient does not have any significant diagnosis of this sort. Having spent so many years on this board, I have seen too many women show up in the Not Diagnosed forums who decide that they want a BMX only because of a distant relative who had breast cancer, or after a benign biopsy (with no high risk factors found). In these cases, the medical community does have a responsibility to educate the patient about her risk level, which in those cases may be no higher than average.
On the other hand, it often appears that it's patients who have to educate the medical community when it comes to the risk of a new primary after a first (or second) diagnosis of breast cancer. In your case, refusing you a BMX after your second diagnosis of breast cancer was unconscionable.
Edited to add: Mavericksmom, we were writing at the same time, and made many of the same points.
Jul 11, 2019 05:09PM Spookiesmom wrote:
Can you get a new doc and surgeon now? One who will do what YOU want?
In 2012 I was dx stage 3, grade 3. I told my BS both had to go. He grumbled some, but did it. I went the poison, slash, burn route. The year from hell.
I had some good years. Until January of this year. I’m now stage 4. The IDC showed up on the other side.
Jul 11, 2019 10:13PM k4523 wrote:
I feel so bad for you. I just had a double mastectomy for ILC (also had lumpectomy with LCIS in 2011). My choice to remove it all was because I was tired of MRI's, ultra sounds and mammograms alternated every 6 months and really preferred removal over radiation. I'd had enough of core biopsies, Mammogram call backs and everything else. Luckily it was caught early and the two options the surgeon laid out were lumpectomy with radiation or, based on my history, a double mastectomy. My Oncologist concurred. Follow up pathology showed a lot of LCIS that had not been detected by mammogram or ultrasound in the "healthy" breast as well as other abnormalities. In the end, I feel I made a good choice for me.
Jul 11, 2019 11:41PM Cowgirl13 wrote:
I absolutely cannot believe this. I have never heard of such a thing. It's draconian.
Jul 12, 2019 06:20AM Mavericksmom wrote:
Thank you all for your comments. It really helps me mentally to know I am not crazy for having wanted a bi-lateral mastectomy.
I really need to see a psychologist or some mental health provider because it is so difficult dealing with all of this. The problem is how to fit seeing yet another doctor in my already booked schedule, not to mention the cost! My lymphedema therapist wants to see me three times a week. I am dreading the wrapping again, but know it is needed in order to get compression sleeves and gauntlet.
I will see my breast surgeon in August and I am telling him that future radiation is off the table and that I will not have a mammogram until May! I work for a school and I am off in the summer, so if something showed up on a mammogram I could treat it in the summer. I can't afford to go out on disability again. I am also telling him that I am considering going to another doctor from a different hospital. for a prophylactic mastectomy since he refused to do that because I am BRCA negative.
Again, it is my fault, because I didn't go for a second opinion. I am going to discuss this with my gynecologist in September. She is at a hospital in NJ (I live across the river from NJ) and hopefully she can recommend a breast surgeon who would remove my other breast. The only reason my ILC was found early was because my gynecologist listened to me and ordered a diagnostic mammogram/ultrasound. It was missed on the mammogram but showed up on the ultrasound.
Jul 12, 2019 08:34AM Legomaster225 wrote:
I'm sorry you have to struggle with this Mavericksmom. It seems odd to me that your Drs. Would not even consider a BMX for you. I had a BMX and my BS (love him) and the other Drs in my tumor board consultation all said it was up to my wishes. For a couple different reasons (And yes, fear was one of them) I chose a BMX. It was never really questioned although my BS did explain to me that studies showed that there was no reason to remove an otherwise healthy breast. It was ultimately my decision. Well, upon removal of my “healthy" breast a 9mm tumor was found that did not show up on multiple imaging. My breasts were very cystic but it still was not identified. I'm glad I made the decision I made. I realize this is not the case for most women. I guess I'm special that way :-). If you feel strongly that you want your other breast removed perhaps another doctor would be a good option. It was never once an issue with my insurance. MRIs they questioned and we had to provide reasons for but breast removal was never questioned. I hope it all works out for you and you get what you want.
Jul 12, 2019 09:56AM Mavericksmom wrote:
Thank you Legomaster! I really appreciate your comments.
Would you believe my sister was recently diagnosed with a 0.8cm IDC and she was given the option of a bi-lateral mastectomy! She lives about 2 hours from me but her doctor is a Penn Medicine doctor! She opted for lumpectomy and radiation which is certainly appropriate, but the point is, even without major risk factors, she was offered what I was refused!
I am definitely seeking out a new doctor to remove my “healthy" breast! I will still need to wait until next summer for surgery, which unfortunately gives more time for any lurking cancer time to grow, or a new cancer time to develop.
My only defense now is Letrozole. I'm still not confident that it is going to help muchdue to being obese.
All I can do is eat a plant based diet, exercise and take the AI.
Jul 12, 2019 11:37AM Legomaster225 wrote:
Frustrating for sure! Sorry that your sister now has to join our ranks. With your family history I think I would have made the same decision she did. As for you having to wait that is unfortunate BUT you have removed the cancer, your nodes were clear AND you are taking the AI to thwart any lurking cancer from taking hold. That along with the diet changes, exercise will only help any future recurrence. We can only do what we have control of and for now you are doing everything you possibly can so take comfort in that. Just continue what you are doing, heal up and find a new dr that will accommodate your wishes and be ready to roll when you can have your next surgery. As always, I pray for all of us!
Jul 12, 2019 01:29PM Runrcrb wrote:
Mavericksmom, thanks for starting this discussion and I’m sorry you didn’t get want you wanted for treatment. Interesting thing for me is that my breast surgeon advised a double mastectomy. I spent a lot of time investigating and consulting with several doctors - plastic surgeons, radiation oncologist, etc. Despite ILC, I determined that I didn’t want to remove the healthy breast. The PS I used was helpful as we talked about how removing the breast wouldn’t have a significant impact on my recurrence risk but did double my surgical risks. And the flap on the healthy side could fail. As you can see in my stats, I had a unilateral mastectomy. Knowing what I know now, the first option presented to me (BMX and implants) would have been awful for me. Each of us has our own decisions to make; I’m sorry you didn’t have better support for the one you felt was right for you.
Jul 12, 2019 03:18PM Mavericksmom wrote:
Runcrcb, thanks for adding to the discussion!
Actually, in 2003 when I had my first diagnosis, there was NO WAY anyone was going to take off my breast. Fast forward to 2019 and I wanted both off. Both times I had my reasons.
As for eliminating recurrence risk, I was told that having one breast with ILC, it is unlikely it would "recur" in the other breast, but rather whatever triggers caused the ILC in the first breast could also trigger it in the other breast. Does that make sense? Unlike IDC, ILC often occurs in both breasts. I think I have ILC or at least LCI in the "healthy" breast already, just a gut feeling. I do not trust the tests that I have had done so far. My ILC was not seen on the mammogram.
I have had 16 surgeries in my lifetime and I am always aware that another could be risky. What you said about BMX making your surgery more risky makes sense. I wanted BMX without reconstruction (perhaps reconstruction done at another time). They wouldn't do that. I can't see how that would have been more risky than the 8 1/2 hour surgery, removing one breast and doing DIEP reconstruction. My fake breast doesn't look great, very discolored and the wounds caused by prior radiation took 6 months to heal and still don't look great. I won't allow anyone to do any further surgery on that side!
When I said I wanted a BMX without reconstruction I was told NO, they don't take off healthy breasts! That makes no sense to me! It sounds more like, "we prefer to wait until you get breast cancer in that breast too!" OK, that may sound drastic, and I do believe most women will never get breast cancer in their "healthy" breast," but I am not most women!
Why do we need mammograms and other tests every year if they are so sure the healthy breast will stay healthy? Because they don't know for certain it will stay healthy! If I get BC in my right breast I am screwed. I will NEVER allow anyone to do radiation treatments on me, nope, no jelly bean size blisters and skin sloughing off, been there done that!
The point is that each woman is different. We have different life styles, commitments, beliefs, and we are at different stages in life. Our feelings about treatments change over time as well. In the end, having a single mastectomy or double, should be the woman's choice!
I will forever regret not getting the second opinion! All I can do now is move forward.
Jul 12, 2019 04:27PM Beesie wrote:
The odds that our healthy breasts will remain healthy are significantly worse than the odds of the average woman developing breast cancer in the first place. The risk to develop a second primary breast cancer is higher than we are led to believe.
- For women who have a hormone positive first breast cancer, the risk to develop a second primary breast cancer is approx. double the risk of the average women developing a first breast cancer. The risk is significantly higher for women whose first breast cancer is hormone negative. For women diagnosed the first time at a young age, the risk is substantially higher.
Second Primary Breast Cancer Occurrence by Hormone Status. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720990/#!po=32.7586
- The annual incidence rate of ipsilateral breast tumor recurrence and contralateral breast cancer in women diagnosed with early stage invasive breast cancer is 0.6% per year and 0.5% per year, respectively, with incidence rates steadily increasing with the length of follow-up.
Incidence of isolated local breast cancer recurrence and contralateral breast cancer: A systematic review https://www.ncbi.nlm.nih.gov/pubmed/29621695
- In the first 23 years of follow-up, the risk of a secondary breast cancer in breast cancer patients was significantly higher than the risk of breast cancer in the general population.
Patterns of Occurrence and Outcomes of Contralateral Breast Cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6025574/#!po=32.6087
Per the studies above, the risk level is not so high that every woman diagnosed with breast cancer should be encouraged to have a BMX, but if a patient requests a BMX, no doctor should refuse.
Jul 13, 2019 01:26PM Mavericksmom wrote:
Spookiesmom, I wanted to say a big THANK YOU to you for asking me if I could go elsewhere to get a prophylactic mastectomy. When you made that comment my first reaction was "no, it is too late for me to do that!" I actually think you may have said the same thing to me on another thread, and I had the same reaction. BUT, you planted the seed! I thought about it and realized that yes, I can go elsewhere for a prophylactic mastectomy! Why not? I can't take off from work again for it, but I can wait until next summer and have it done then since I work in a school and I'm off for the summer.
I decided to discuss it with my gynecologist when I see her at the end of September. I am also doing risk assessment which might add some reasons for doing the surgery.
I can wait. I actually want to lose about 50 pounds and that will give me time to take the weight off slowly and safely.
I am not 100% sure I will follow though with the surgery next summer, but once I opened my mind to the possibility of having it done, a great deal of pressure was taken off my shoulders! I feel so much less stressed and angry. I feel empowered!
Just another example of people putting information out there for others and how much it can help!
I know each and every one of you added great information to this discussion and I can't thank you enough!
Beesie, thank you for the links to the studies! Very interesting!
Breast cancer is not a one size fits all disease and we sometimes need to remind the medical community of that!
Jul 13, 2019 01:38PM - edited Jul 13, 2019 01:44PM by Spookiesmom
I retired from a school job too. Was bus driver. We got 2 weeks off winter break. Once the drains came out, I could drive my car easily. I could have gone back to work on the bus. Something to think about, using that winter break for your surgery. Especially if you have an office job.
There I go again, planting ideas in your head. 😂😂.
In fact, thinking back, I did have a major surgery over winter break one year. For TMJ. Was scheduled for the first Monday of break Sure, I couldn’t chew, but it didn’t disrupt the holidays too much. When school started again in January I just scooted over in my seat so I wouldn’t get clobbered by a backpack.
Jul 13, 2019 02:02PM wrenn wrote:
I requested BMX because I didn't want to be lopsided and was done with breasts. They were huge and I was older so not sure if that made it easier. My surgeon said she was relieved that I knew what I wanted so she didn't have to decide. :-)
Jul 13, 2019 03:26PM Mavericksmom wrote:
LOL Spookiesmom! Please, don't ever stop planting those ideas in my head! I work to give learning support to special education students in regular education classes.
Good idea about winter break but I am going to pass. I was diagnosed with the ILC in early Dec. and was in total shock for a long time because I had been cancer free for almost 16 years! I honestly (wrongly) thought I was "cured!" Of course I will NEVER make that mistake again! Anyway, it kind of ruined the holidays for me. I pressed on with family traditions, but my heart wasn't into it and my head felt like a hot mess! That is part of why I went along with my doctor and didn't go for a second opinion. I think I was in disbelief for months AFTER my surgery, it just didn't seem real.
That said, I do get a week off in the spring so maybe a possibility. I don't want HR knowing. About 4 months after my final radiation treatment the first time I had BC I had to have my gall bladder removed. I had been on disability 7 months due to chemo and radiation and I was afraid my boss would think I was not a healthy person. I ended up taking only 2 days off and was back to work the third day and. That was because they kept me overnight, otherwise I would have gone to work the next day.. I know it was a foolish thing to do, but I did it! No one but a close friend even knew I had the surgery. HR never found out! That said, I am 16 years older, retirement age and I can't bounce back as easily, which is why I am thinking more about doing it next summer.
wrenn, I am totally with you! I wanted a BMX without reconstruction, but that isn't what the doctors wanted. Two doctors at the visit told me they don't remove healthy breasts! Being older does make a difference. When I had BC in 2003 no way would I let anyone take one of my breasts off. This time I wanted them both off.
Jul 13, 2019 03:48PM exbrnxgrl wrote:
I am a teacher and have the summer off too as well as breaks throughout the school year. One thing that concerned me about your post, was your reluctance to take time off for health reasons because of fears about HR. May I ask if you belong to a union? I do and all time off, paid or unpaid is governed by our contract. I took a 3 1/2 month medical leave during initial tx. Between accumulated sick days and disability, I was paid (no full pay dater sick days were used) the whole time. Additionally, had I needed more time off medically, the contract stipulates that I would still have a job (though it might be at a different grade and/or school in the district depending on how long I was gone). If you do belong to a union, you may be afforded some protections contractually.
If you don’t, then never mind, but please put your health before your job! Take care.
Jul 13, 2019 04:35PM Mavericksmom wrote:
Hi exbmxgirl! I am in a union, but it is not strong. We have been without a contract for a year, still working off the old contract. It's in arbitration. Our teacher's contract expired in June and they aren't anywhere near a settlement. New hires for Instructional Assistants are now from an outsourced agency. They get less salary and literally no days off for illness or personal reason. It is strictly a work for pay job! So unfair!
I am going year to year as far as retirement goes. Last year hurt because I lost a year in the equation that calculates my pension. I know, I am very lucky to have a pension, it is from the state. I also lost thousands of dollars which I hoped to use to pay down debt before I retire. Ideally I want to work one more year, realistically it may be 2-3 more.
You are right, I should put my health first, but I am old school (no pun intended) and I hate to miss work. Also, it isn't only for that reason. I made a HUGE mistake by not getting a second opinion and having a BMX somewhere else. Now I am living with that mistake. I want to recover from the 8 1/2 hour surgery I had in January before entering into another, even though it will be a piece of cake compared to that one. I want to lose weight and exercise and get my lymphedema under control. I will be having therapy for 6 weeks, then wear compression garments.
Of course things could change, but I don't feel a lot of urgency to get the breast removed before next summer. I am making life changes, taking Letrozole and trying to get as healthy as possible. I do plan to speak up to whoever I need to at the hospital I went to in order to get them to do one of two things, either change their policy of "no removal of healthy breast other than BRCA positive," or put that statement on their website! I know they won't put it on their website because they don't want to lose patients and $$$. They are an excellent hospital with quality care, but their BMX is wrong! Had I known about the policy, I would have gone to one of the other 3 outstanding hospitals in my area. I also would have known to ask if they will remove a healthy breast at the woman's request before scheduling an appointment!
If anyone lives in the Philadelphia area and thinks they want to have a BMX, they should ask about it first. I know most of the hospitals will honor the woman's wishes, which is the reason I didn't even think to ask about it before I scheduled my appointment where I did!
Jul 15, 2019 02:17PM Mavericksmom wrote:
I saw my PS today and it was a very good appointment! I have another appointment set for March 2020.
I will see my BS in a few weeks and after the conversation with my PS, I feel I can have a very meaningful conversation with my BS about having a prophylactic mastectomy. My PS will either do reconstruction, albeit different than the DIEP surgery I had since that can only be done once, or if my BS convinces me I will be able to stay cancer free in my real breast, a lift in that breast. I'm leaning towards mastectomy & reconstruction. Hopefully my BS will get on board.
I do want to lose weight and I will have the risk assessment done which will add information for my decision
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